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Kolakowsky-Hayner, S. A., Miner, K. D., & Kreutzer, J. S. (2001). Long-term life quality and family needs after traumatic brain injury. Journal of Head Trauma Rehabilitation, 16(4), 374-384.

Objectives: This investigation assessed the life quality and long-term family needs of caregivers of persons with brain injury. Design: Respondents completed the Virginia Traumatic Brain Injury Family Needs Assessment Survey. Setting: Community-based sample. Participants: Respondents included 57 caregivers of persons with traumatic brain injury who were at least 4 years after injury and who resided in Virginia. Respondents ranged in age from 19 to 82 years and were primarily women and Caucasian. Outcome measures: The Family Needs Questionnaire (FNQ) and quality of life questions. Results: Results indicate diminished life quality after injury. With regard to family needs, Health Information (51.43%) and Involvement with Care (47.93%) needs were most often rated as met. Instrumental Support (31.52%) and Professional Support (28.38%) needs were most often rated as not met. Conclusions: Family needs and support systems for those needs change over time. This investigation provides evidence that unmet family needs extend well beyond the acute setting and that caregiver life quality diminishes over time. The importance of appreciating long-term family needs and other life quality issues should not be underestimated.